Monday, January 31, 2011

Finished the sweet little Manda Ruth and snapped a quick picture, it still needs to be blocked before I post a full shot but this should give you an idea of what an adorable sweater this became. I'm also working on the sweater for me I imagine that will be finished today or tomorrow and then I will probably move on to a pair of overalls and a zip up hooded vest for L.

February begins tomorrow and that means we'll be 15 days out from the surgery. V's behavior is out of control as always, and I really hope things calm down after the surgery. I've been a bit torn lately about writing about our journey and how much to discuss and show. I'm really sensitive to the fact that at some point V (hopefully) will be a typical kid and do something like google her name (or her friends will) and I don't want all of this to pop up for everyone to see, this is her story and her journey and when she is old enough she should have the right to decide who she shares it with. However, there are other families going through this and I know when we knew this surgery was coming I was hunting for other folks who were writing about the process and how they handled everything. I wanted to read as much as I could about everything, so on some level I do NEED to share this now without her permission. So I walk a fine line, that is why I never use her name, and why up until this point there are no pictures of her (although that will change I do plan on putting some pictures up soon). I want to post a few short videos of her seizures because I think folks need to see that seizures aren't always what we think they are, sometimes they don't really look like seizures at all. I do not want to perpetuate that idea that epilepsy and seizures are something to be hidden, but the idea of posting videos of V seizing makes me uncomfortable, it is a private and personal thing and I am not sure if I want to put that out for the world to see. As the surgery date approaches though I do feel the need to share a bit more about V so she isn't just an anonymous person having epilepsy surgery but a real child with real parents, real siblings, and real grandparents and aunts and uncles who care deeply about her.

Wednesday, January 26, 2011

A work in progress shot of the sweater I am knitting for myself. So far I love it and I'm excited to finally get to wear something I've made. I bought this yarn about a year ago and intended to make myself a February Lady sweater with it but when the yarn arrived it was a tad too busy for that sweater. I almost sold this yarn off a few times because I just couldn't figure out what it wanted to be -- then I stumbled on Elysium. It seems this yarn wants to be an Elysium.

On the V front we are still in waiting mode. It looks we can now consider her fifth med a failure, she is back to having almost daily seizures maybe one or two good days in there and her behavior is just as off the wall as it was on Keppra. She is so close to her surgery though that it isn't worth it to wean her off this one and wean her onto another one so for now we are in a holding mode and just waiting for February 16th. This surgery can't come fast enough just this week V has become aware that something is different about her, and it breaks my heart. Every morning she asks why she has to take medicine but her sisters do not, and at least daily she asks me what she is sick and tells me she wants to be better. I am so glad we are just a few weeks out from surgery watching her realize she is different is far harder then I thought it would be. I was naive in thinking that she wouldn't even begin to ask these questions and I really should have prepared better for it. The reality of her what her future holds becomes a bit scarier every day.

Tuesday, January 18, 2011

I am almost done with the Manda Ruth sweater. I ran out of yarn and am waiting on another skein to finish the button band. I have two choices for buttons, both from fantastic Etsy sellers. The square set are reclaimed red oak from Hendywood, and the darker brown round set are polymer clay from Tessa Ann. I think both choices look great and they each give the sweater a slightly different feel. I can't wait to hear what the choice will be!

Things on the homefront with V are starting to take the track they always seem to, a new medicine works for a period of time and then stops working. She was seizure free today however she had a few decent ones Saturday, Sunday, and Monday -- she seems to be starting a cold so I really hope that is why we are seeing all of this seizure activity. If all of this bad behavior we've been dealing with while she is on this med is for nothing I may just go crazy. The good news is we are now less then a month away from her surgery so the end is definitely in sight.

Friday, January 7, 2011

The first knit item for 2011 was finished last night! These are for the Disco Baby Knits stocking at Their Own Knitted World next Thursday at 9pm. I would call these medium longs, I actually knit these to my middle daughters measurements. All of my kids are on the skinny and tall end of the growth chart so I have such a hard time finding handmade items (and store bought items) that will fit them -- pants being the hardest of all. I figured there has to be other little girls out there with the same issue and if there isn't then R gets a new pair of longies at the end of the month. These have a 16" rise, 20" hip and a 10.5" inseam. They were knit with Disco Baby Knits Roberta colorway with matching solids on Mountain Meadow Wool. This yarn is fantastic, the softness and texture of Cestari but way easier to knit and the skein goes on forever, plus I haven't verified it myself but I hear it is machine washable (always a plus with toddlers).

This will be the last item I stock for a few months so for the next few months I will continue to post but with items I am knitting for personal use, gifts or trades.

I am finishing up the never ending scarf for my brother -- this is just a simple (long) scarf knit with Knit Picks Gloss a wool and silk blend that is just stunning. I really want to get a few skeins of the worsted weight version of this yarn to make myself a sweater, I love the feel of it.

On the V front things are going pretty well, we began valproic acid (name brand Depakote) 3 weeks ago now. We just started the full therapeutic dose yesterday (she has to be stepped up slowly on this med like many seizure meds) so I am eager to see if the improvement we've seen remains. We are noticing a lot of aggression especially when she is frustrated. She was never a biter but she has become a horrible biter in the last 2 weeks, she bites me in particular whenever she gets frustrated. We are handling it with very firm and immediate time outs for every bite but right now it doesn't make much of a difference. We are pretty sure it is a side effects of the Depakote because it began so suddenly, as long as it doesn't become more severe (and as long as she isn't biting her siblings) we can deal with the biting us until her surgery in February. Thankfully once she has her surgery she will most likely not come home on Depakote -- they are just using it as a bridge to get us to the surgery date without having 5+ seizures a day every day. 39 days until her surgery!